(UPDATE: The NIH provided a response to our comments on September 26, 2019) On September 13, 2019, Knowledge Ecology International (KEI), Union for Affordable Cancer Treatment (UACT), Public Citizen (PC), Social Security Works (SSW), LWC Health, Ruth Lopert, Manon Ress,… Continue Reading
On September 9, 2019, KEI submitted a second request to the NIH that it investigate an apparent failure to disclose federal funding in patents in adeno-associated viral (AAV) gene therapies assigned to the Trustees of the University of Pennsylvania (UPenn).… Continue Reading
On September 3, 2019, KEI submitted a request to the NIH that it investigate an apparent failure to disclose federal funding in patents in adeno-associated viral (AAV) gene therapies. A failure to disclose federal funding is a violation of the… Continue Reading
On September 12, 2019, Knowledge Ecology International (KEI), Union for Affordable Cancer Treatment (UACT), Universities Allied for Essential Medicines (UAEM), Social Security Works (SSW), and Clare Love filed an appeal with the National Institutes of Health (NIH). The signatories appealed… Continue Reading
Zolgensma is a gene therapy for spinal muscular atrophy (SMA) that was approved by the US FDA in May 2019, at a price of $2.1 million per patient. Zolgensma was licensed from a children’s hospital where it was developed on… Continue Reading
Executive Orders 1944. President Roosevelt. Executive Order No. 9424, Establishment of a Register of Government Interests in Patents. Source: The provisions of Executive Order 9424. February 18, 1944, at 9 FR 1959, 3 CFR, 1943-1948 Comp., p. 303, unless otherwise… Continue Reading
Re: Clinical trial cost request, June 2019 In June 2019, KEI reached out to Dr. Jerry Mendell in an effort to obtain information on clinical trial costs. June 19, 2019 Email from Laurel Boman at KEI to Dr. Jerry Mendell… Continue Reading
(UPDATE: The NIH provided responses to our comments on August 14, 2019: 84 FR 33272 Response and 84 FR 33270 Response) On Monday July 29, 2019, Knowledge Ecology International (KEI) submitted joint comments to the NIH on behalf of KEI,… Continue Reading
This is a copy of the “We PAID Act” by Senators Chris van Hollen (D-MD) and Rick Scott (R-FL). The We PAID Act The 31 page bill creates a new non-profit organization to determine reasonable prices for drugs that use… Continue Reading
On July 22, 2019, Knowledge Ecology International submitted a letter to the US House of Representative’s Committee on Oversight and Reform regarding the National Institutes of Health’s (NIH) lack of transparency in its exclusive licensing processes. Prior to executing an… Continue Reading